10.11.17

As I sit here and type this, Doris Day’s Que Sera, Sera is replaying in my head over and over. I distinctly remember my mom singing that song to me (as I do for Nora & Peter) when I was a little girl. It’s always stuck with me and I feel like it’s been my anthem for life over the past few years.

Which brings me to the point of this post. It’s hard to believe that 10.11.12 was FIVE years ago. Que sera, sera. What will be, will be.

Thankfully, I’m happy to report that my latest test results indicate that I’m still NED (no evidence of disease). Wahoo! Happy 5-year cancerversary to me!

As most of you know, making it 5 years without a recurrence or distant metastasis for a triple negative-er is a really big deal. At this point (assuming the scientific literature out there is still accurate) my rate of recurrence drops significantly. Metastasis could still rear it’s ugly head one day, but I’ve learned to embrace the Que, Sera, Sera part of life!

Does this mean that I’ll rest on my laurels and go back to “normal” life? No my friends, there is no such thing as “normal” life anymore – just the new normal – which includes exercise (ugh.), self-care (read: switching to non-toxic make-up, personal care products, laundry detergent, household cleaning items, and trying to eat “clean” while balancing ALL of that against just living my life and enjoying myself!) and continued check ups with Garrett every 3 to 4 months.

But seriously, as shitty as things have been, they’ve been equally as amazing. I wouldn’t trade a thing about the past 5 years because I’ve grown so much as a person. Of course, I wouldn’t wish cancer on anybody, but for me, it was (and is) a profound experience. I’ve met so many beautiful souls along the way. Without my community, I wouldn’t be where I am today. So I thank all of you who have been there for me and my family — holding space for us and holding us in your hearts and prayers when we needed it most. I hope to return the favor as many times over as I can.

For now though, I’ll happily continue cruisin’ along in this lane. It’s not a bad lane to be in…

xoxo,
Andrea

_F8A1234b (1)_F8A1234 (1)_F8A1270 (1)img_2255
Photo Credit: Piece of Heart Photography

 

Pinktober – Enough with the Pinkwashing

It’s that time of year again. Thought I’d throw a little information your way to help you navigate all of the pink washing that’s a’comin’

1 in 8 women will get breast cancer. 30% of those initially diagnosed with early stage disease will go on to become metastatic (aka Stage IV). 4% of newly diagnosed breast cancer patients are Stage IV at initial diagnosis. 113 people die from Stage IV metastatic breast cancer (MBC) each day in the US. There is no cure for Stage IV and only 2-5% of research funding goes to MBC.

What we need is to find a cure for this disease. We don’t need pink mugs, pink scarves and/or pink ribbon keychains.

While some women live for years with Stage IV disease, others do not. Their collective voices aren’t always able to be strong as they’re enduring treatment while simultaneously trying to live life.

It’s up to US to make their voices heard. To demand money be directed toward finding a cure and supporting actual individuals living with metastatic disease.

This year I’ve lost 2 friends to MBC, and their deaths should mean something. I have another 5 friends who are living with MBC and I fear 2 of them will die before long. This is scary and so sad.

Please do me (and every other person you know who’s been diagnosed with breast cancer) a favor, and don’t get sucked into the pink washing. Please ask where the funds for pink products are going. Please research those organizations to see if any of that money actually goes toward patients or research.

I’ll make it easy for you. Below is a list of 4 organizations I think you should give your money and time to, if you’re so inclined. Just skip the rest of the noise….

Breast Cancer Action
Breast Cancer Action is not your average breast cancer organization. We’re fiercely independent and refuse corporate funding from any company that profits from or contributes to breast cancer. That means we can ALWAYS put women’s health first.

We’re focused on achieving health justice for all women living with and at risk of breast cancer. Radical and compassionate, we never shy away from the hard truths. We tell it like it is about breast cancer: 40,000 women die of this devastating disease every year, and we don’t have nearly enough to show for the billions of dollars raised in the name of breast cancer.

BCAction was founded in 1990 by a handful of women who were living with and dying from breast cancer and who demanded answers about their disease. Today, BCAction is a national grassroots organization with members across the country. Together we’re challenging the status quo and working to address and end the breast cancer epidemic.

Metavivor
METAvivor is the only organization in the US that exclusively funds MBC research through a scientific peer-review process. We award research grants to individuals with a clinical or other doctoral degree who are actively engaged in areas of metastatic breast cancer research, and whose proposals show distinct promise in making a difference for the stage 4 breast cancer community.

Our mission is to transition metastatic breast cancer from a terminal diagnosis to a chronic, manageable disease with a decent quality of life.

100% of proceeds from every fundraiser (after event expenses) goes into our research grants.

Breast Cancer Prevention Partners
A science-based advocacy organization that works to prevent breast cancer by eliminating exposure to toxic chemicals and radiation.

BAYS
Bay Area Young Survivors (BAYS) is a support and action group for young women in the SF Bay Area who are living with breast cancer.

Through monthly support group meetings, an online network, and community-building events, BAYS members share information, experiences, and resources. Our goal is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration.

May 6th – Preview Reading of BAYS’ Newest Book

This month, AnthologySF is turning over their regularly-scheduled anthology reading to the breast cancer support group that I’m in — Bay Area Young Survivors (BAYS).

At this event, I (along with a few other contributors to the book) will be reading a piece I wrote for our upcoming book centered around the aftermath of treatment, piecing our lives back together, and climbing these treacherous cancer stairs to get a better view. The book will be available in September 2015.

If you’re in SF, please come out and support us! The event is being held at 7pm at La Movida Wine Bar, 3066 24th Street, San Francisco, CA 94110.

About BAYS:
Bay Area Young Survivors (BAYS) is a support and action group for young women in the SF Bay Area who are living with breast cancer. It was founded in 2004 by two young women because support group meetings with older women did not address our unique needs in dealing with issues related to fertility, child rearing, dating, body image, early menopause, careers, and lack of peer experience with cancer.

The goal of BAYS is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration. We are at each other’s sides during death, births, chemo infusions, and birthdays. Virtually every day of the year we add new members and throughout the year we also lose members to the disease. We welcome the newly diagnosed, to those with recurrent or metastatic disease and long-term survivors.

BAYS achieves it goals by sharing information, experiences, and resources through 3 main services. We offer: over 30 support group meetings annually with free childcare, an active online network, and community-building events to support the emotional and educational needs of our members.

BAYS published an anthology in 2013 entitled, “The Day My Nipple Fell Off and Other Stories of Survival, Solidarity, and Sass.”  We look forward to publishing our newest book in the fall.

IMG_3344

Nora and I in Kauai!

My Legacy

It’s been a long while since I’ve posted anything of substance.  I’ve not had much to say these days — so I went back into my archives and found this draft post — from October 21, 2013.  I’ve not edited it at all. I figured it was best to just post it — grammar/spelling warts and all. So here goes………….
________________________________________________________________________________________

Lately, I’ve been thinking a lot about my legacy.

Legacy is defined as “something transmitted by or received from an ancestor or predecessor or from the past”.

For me, as you most of you know, at this point, it’s very unlikely that I’ll have my own biological children. If you’ve been following my blog, you know I’ve struggled with infertility and then cancer struck. After aggressive chemo nuked my entire body, including my ovaries, there’s little possibility that I can use my own eggs for a pregnancy. Hell, I’m still technically in menopause and have no clue if I’ll ever get my period back (TMI? Don’t read this blog then!).

But, all of that said, I still think about my legacy.  When Paul and I were picking our egg donor, her family health history was very important to us. We looked for red flags, like cancer, heart disease, metal instability etc. Obviously, you don’t WANT any of that if you can avoid it. Thankfully, our donor and her family, on paper, lacked those “bad” traits. Though I’m no dummy, that shit can hit her family tomorrow. I’m living proof of that.

Now, that the dust has settled with my own treatment, I realize that my own family will have to grapple with my diagnosis as it relates to themselves and their own families.  My thoughts immediately go to my brother Bob’s daughters.  Will my darling nieces have to get the BRCA gene test? Since I was BRCA negative, will that test and it’s results even be meaningful if they do have it? Will Bob and Sarah worry every day about their daughters’ susceptibility to cancer given that their paternal aunt got it?

I also think about my maternal cousins; but I’m less worried about them as they’re grown women who can make sound decisions for themselves. What about my first cousins’ children? I realize that’s a bit far removed, but I still think about it.

Finally, we all know that breast cancer doesn’t only impact women – men can get it too. For some reason, I feel cavalier on this front. I feel sure that no men in my family will be impacted. But that’s probably stupid of me. So to my brothers and my male cousins — FEEL YOUR BOOBIES. Sorry, it is what it is.

Ugh. I’ve been so busy thinking about me and getting through this ordeal. I didn’t stop to think what sort of reality and worry my DX may have wrought on my family and extended family.

My only hope is that this starts and ends with me. That my body simply went haywire and that’s the end of it.

Geez, reality does bite.

The BAYS Bosom (irony intended)

This past Sunday I attended my first BAYS clothing swap.  Members bring their clothes, shoes, meds and accessories (like chemo hats and fuzzy socks in addition to scarves, purses and jewelry) that no longer serve them, and we all swap over snacks and bevvies. So fun, right??!!!

It’s difficult to describe how comforting it is to be completely enveloped by the fierce love of my fellow compatriots. The BAYS bosom is a loving place to be (even though many BAYS women don’t actually have a bosom — just mastectomy scars (a proud reminder of their fight) hence the “irony intended” part of my title!!).  I feel held up and celebrated when I’m amongst these women. And it helps me to be able to give others my support — since I’m not that far out of active treatment — I didn’t really think I’d be able to inspire or support anybody — but as it turns out, I can and do!

Not surprisingly, it didn’t take long (about 3 minutes!) before someone stripped down and we were all feeling each others foobs, or lack there of, for those who opted out of reconstruction.  Never in a million years did I think I’d regularly be standing around looking at other people’s chests and flashing my own without a second thought!  We ooh and ahh over an amazing nipple tattoo job. We inspect my still healing surgical incisions and determine I’m progressing nicely even though I still have a lot of isolated pain.  We pinch, squeeze, poke and touch each others chests. We allow space for one of our sisters to complain about how her body betrayed her and rejected her implant, so now she’s left with a concave crater with folds in place of a foob.  Not the look she was going for at the outset of her journey. But this is the sort of shit that happens. Implants get rejected, scar tissue bites you in the ass, and your BAYS sisters will hug you and let you bitch about it to your hearts content. This is a no judgement zone.

We laughed, visited, found some great new clothes. We danced, cried, embraced and examined our boobs some more. We let our fellow sister who is having a cancer recurrence dance and sing and be joyful. And when she didn’t feel like doing that anymore, and the tears and sobs overcame her — we all embraced her channeled our love and support into her.  I could be her in a few years.  Recurrence is a very real possibility and fear for every cancer survivor, including me.  But, we all take solace in the fact that we have BAYS — this magical community — we know BAYS will be there for us when our time of need comes — no matter how big or small that need may be.

My BAYS sisters recently published an anthology entitled, “The Day My Nipple Fell Off – and Other Stories of Survival, Solidarity and Sass”.  If you’re reading this post at home and really want to know how amazing the women of BAYS are, go out and buy this book immediately.  I’ll make it easy for you — here’s the link to Amazon: http://www.amazon.com/Nipple-Other-Stories-Survival-Solidarity/dp/1484934024.  I greedily consumed it cover to cover in about 3 hours. Buy one for yourself and a copy for anybody you know who has been impacted by breast cancer (fighter or caretaker). It’s an incredible read that will make you laugh out loud as well as ugly cry.

I am proud to say that I personally know, and am friends with multiple authors in the book. So happy to be  part of this wonderful support group. Not sure what I would do without these characters. Thank you BAYS for all that you do — for me, and countless others.

For those of you wondering, I got an amazing raincoat, a great wool vest and a beautiful dress.  Others took home a scarf and two pairs of wedge sandals that I brought.  Yes, I feel my closet was validated b/c people took my stuff home — shallow — but, whatever. It is what it is…

xo

BAYS Holiday Party!

Holy crapperpants. Girls with breast cancer are friggin’ FUN!

Paul and I went to the BAYS holiday party this past weekend and had the time of our lives. Well, I can’t actually speak for him, but I had the BEST time (small aside — I think it’s due time for a guest blog entry from Paul, don’t you?).

It was awesome to be around a bunch of women at every stage fo this battle and see that they all are surviving and are keeping their sense of humor (most importanntly). The absolute highlight of the night for me was when the game-playing started. Oh yeah, that’s right — cancer patients play games too!

We played breast cancer charades (clues were things like “IV,” “Lumpectomy,” “Radiation” “Bald,” “Chemotherapy,” “Mastectomy “– you get the drift). We also played breast cancer Family Fued (“Top ten things people said to you after you were diagnosed,” “Top ten tips for post-cancer sex”– hopefully you get the drift again!). It was SO much fun to laugh in cancer’s face and get to know so many incredible women at the same time.

Before you knew it, out came the broom that doubled as a limbo stick. It was such a good time!

At the end of the party, those who felt up to it, all went into a side room and we lifted up our shirts to compare boobs. It was super liberating and really comforting to be so open about my chest just 4 weeks post op. It was also really nice to see the surgical decisions my sister warriors had to make for themselves (not all opted for/needed the bi-lateral).  These gals are great! Amaze. Love, love, love them!

I took a number of pictures, but realize that these folks may not want their photos on my blog, so I am only posting a few pics of Paul and I, as well as, a few pics of Ami (yes, you read that correctly, Ami as in Ami Weghorst Dodson — the one who I dedicated a post to earlier!) and I.

xoxo,

Andrea

Andrea Bays (so=so)Paul Bays (so-so)Aviva BAYSAviva 1 BAYSAviva 2 BAYS

Good Karma

I feel like I’ve been neglecting my blog! So much has happened this week I can’t wait to catch everybody up!

As you may or may not have recalled, this was the week we were meeting with three different medical oncologists here in the city. The idea was to hear each one out, understand their thoughts on my chemotherapy regime (and rationale behind it) and also to just see who we liked best (everything from the doctor, to the nurses, receptionist, office atmosphere etc).

All three oncologists came highly recommended to us, so we knew we couldn’t go wrong — it was really just a matter of who we clicked with.  Our first appointment was Monday morning with Dr. Garrett Smith of Smith Integrative Oncology.  I learned of this practice through the gals at BAYS (Bay Area Young Survivors). Dr. Smith believes in tailoring each patients chemo to them, rather than just taking a formulaic approach.  FOr example, since I am triple negative, most doctors would just say, “hit her with the ACT regime” but Dr. Smith looks at me and my pathology to be sure he makes all the right decisions for what’s best for me.  He also believes in combining acupuncture and massage with chemo so he has people on premises that can offer those services on infusion day in addition to having a nutritionist on site.  OK, need I say more? I don’t think so.

Our meeting went amazingly and I am in love with Dr. Smith (OK, that is a strong word, but boy do I have a crush on him!). He listened to every one of my questions and answered them thoughtfully, directly and succinctly  He also took very seriously our future family planning desires — which as you know are extremely important to us.  Needless to say, we chose Dr. Smith on the spot and I cancelled the other two appointments we had scheduled — that’s how much I liked him and his practice!

Dr. Smith wants to do a few more tests on the pathology of my tumor to determine the exact chemo cocktail I will be on. All of that is underway right now. I likely will have to do the full blown ACT cocktail (I’ll explain what all of that means in more detail when it’s confirmed that’s what I’m getting) — which is the kick-you-in-your-ass cocktail.  But there is the slightest of possibilities that I may only need the CT cocktail (get to skip the “A” which is super duper toxic).  Again, I’ll go into much more detail about chemo and all of its lovely side effects in a different post!

My first infusion is tentatively scheduled for Tuesday, December 18th. Stay tuned for more details on all of that as they come in! Rather than freak myself out about what’s to come, I decided to take to the BAYS list-serve and start a thread seeking advice from chemo veterans. The responses were many and super informational. I plan to summarize all the advice I was given in another post — because I got a lot of great info!

In addition to making the huge decision about our medical oncologist (Which is such a relief! Honestly, I feel SO lucky that we are with Garrett), I also had my three week post op with Dr. Hong (my favorite plastic surgeon on the planet!).  Paul got really busy with work, so my brother Bobby took me to my appointment with Dr. Hong. It was really nice that we got to spend some one on one time together and talk about all the ins and outs of cancer, chemo etc. I forget sometimes that while I’ve quickly become an expert on all things breast cancer — my family hasn’t.  So we talked a lot and he asked a bunch of questions and we just sort of chatted about everything.  It was really nice!

I think Bob was a little bit weirded out that I wanted him in the room with for the plastics appointment though. I mean I’m his sister, he’s not supposed to see my boobs (or lack there of, in my particular case at the moment!). But he was a champ.  Dr. Hong removed all the surgical tape from my surgical incision sites and said everything was healing nicely. He even gave me the go ahead to start shaving my armpits and wearing deodorant SCORE! I KNOW I’m being a good patient if I got clearance for that 3 weeks out! yeah boyyeeee! 

The hardest part of the appointment was when Dr. Hong inserted a needle into my spacers (ie. boob prosthetics) and pumped them up with saline. This will happen for the next few weeks until we get my boobies to the size we want. I’ve mentioned this before, but the process is slow because you are literally stretching your muscle and skin.  The insertion of the needle hurt A LOT (I’m not going to lie to you), the adding of the saline — not so bad.  I had to hold Bobby’s hand through the whole thing — but he said I was trooper and did a good job!

A few hours later however, I felt a lot of pressure across my chest and my surgical arm (ie. my left arm and armpit close to where my tumor and the sentinel node biopsy were done) was really tight and hurting. Thankfully I went to PT that afternoon and really stretched myself out. As a matter of fact Julie Wong, my AMAZE PT, said that I officially have full movement back in both of my shoulders and that I can start putting shirts on every my head! Yay for another small victory!

Unfortunately, overnight, my body tends to tighten up all over again (just by virtue of lying flat and not moving at all), so I woke up in the middle of the night (well, 5am-ish) with excruciating pain. It felt like my chest was in a vice. This is not an uncommon description to hear from people who have just had their spacers filled — from what I’m told. Oh joy! I have how many more of these fillings to go?! Lordie!

But you know me, I cried it out a little bit, Paul helped soothe me, I took a pain pill and then I moved on. I mean somebody needs to take the dog out for a poop, feed her and do the laundry right?! So that’s what I did. I also made my first medical marijuana order — it was due time. I’ll keep you all posted on that journey. I’m not going to try any of the stuff I ordered (edibles as well as medicinal herbs and a vaporizer) until someone is here to monitor me and show me what the heck to do! I have zero clue what a vaporizer is — all I know is that I do not want to smoke pot and I hear during chemo you might be so nauseated — that you really don’t want the edibles. So I’m covering all bases. And like any good Type A gal — I will be test running over the next few days!

So, I’m going to end this post on an up note for you all. Earlier today, I was walking to the bodega at the bottom of the street to get some supplies and I ran into my UPS delivery guy, Devin. He stopped me and said I have a package for you from yesterday, you weren’t home. I replied, yes, I know, I saw your note stuck to my door last night — I had some doc appointments yesterday — sorry I missed you. He went on to say what an inspiration I am to him and then ran to his truck to get me my package.  But, not only did he give me the pair of Rachel Zoe jeans I ordered from Bloomies (yay for Black Friday online sales!) — he also gave my a bouquet of flowers from HIM to ME! How sweet is that? He’s obviously seen a lot of me over the past few weeks since I’ve been home and so many of you have been so kind to send us flowers and pick-me-up gifts. But to have my UPS man get me flowers just because was so AMAZING. That is good karma — finally coming my way. I will make sure to pay it forward. I promise.

xoxo